Tuesday, November 30, 2010

So hotel maintenancecomes up and says I don't have to hang. After all, I have everything valuable in the car. Unless someone wants my pjs or shampoo. So I dash and I am in place for the pickup at 10:11 am. Am I eleven minutes late? Yes. But the pick up has been rescheduled for 10:30 am. The ceremony is scheduled for 11:00 am. I'm good, right??

Nope.

By the time the ride picks up YN2(SW)Gauthier's two North Carolina friends and I; gets us to USS San Antonio (LPD-17); turns us over to our ship escort who in turn delivers us.....

I forgot to pencil in getting ridiculously lost trying to pick up route 13 from route 295 after the Delaware bridge. So I am much later than planned. Plus I sat in one of the rest areas and had a couple of laughs on the phone with my ex-husband.

Sunday, November 28, 2010

So, it's not my cancer, but it's a lot more common and women should pay attention.

Plus, I appreciate the sentiment of the healthcare providers and hospital employees expressed in the video. I know that many people at Tufts NEMC are working very hard for me. I am especially grateful for Dr. Miller, Kate Adelstein, my NP, and the infusion room nurses.

Friday, November 26, 2010

I am drinking tons of water. I want my time off (now until December 6th) to be the best it can be. I think I remember that it helps me recover more quickly. But I can't be sure. Was it a plan? Or a successful plan? If it was successful before, will it still work now? I don't know, but someone please ask me Monday and then jot down the results.

Grace and I met with the transplant coordinator, Denise.

I was way out of it. It was a tough week. Some infusion rooms are shared, some are singles with a geri chair. Some have a gurney....today I was grateful for the gurney. I wanted to be clear for the transplant discussion, so I skipped pain meds and ativan. Poor Grace had to watch my face while they dug for a vein in my hand. With no pain meds....that was no fun. Then I laid down on the gurney, lol.

So in comes Denise with her files. We go over some routine stuff. Yes, I have multiple myeloma. I keep talking about it to people you know. My family. My friends. I keep saying it. I am hoping someone looks at me and says "Bullshit!" "For pity's sake, get a grip. It's no big deal." But no one does.

This is not to say that people are not cheerful and hopeful and optimistic. But no one tells me what I want to hear. I want to hear that I am wrong. That I have misinterpreted something.

One of the nurses reduced the process to this "We are going to bring you to Death's Door....and then we will rescue you."

I hear Father Mahoney in my head leading us in Stations...."I am wearied with sighing."

So Denise runs through things. Some things are not as bad a I thought...or at least they are horrifying in a new way, lol. The first part, the harvest, the collection part does take 14 to 17 days. But they are outpatient days. I can stay with my parents. Why is this better? Number one, privacy. For someone who exposes her whole life out here, I value privacy. But what price privacy? A bathroom on the second floor, a bed on the third floor. I can deal with that or work around it.

I ask her about the next bone marrow biopsy. I have had one and my "involvement" was 70%. I have been reading that some doctors will not do the stem cell transplant unless the patient's "involvement" is less than 5%. I am worried that if I don't hit 5% I will be disqualified. Denise says she will check with Dr. Miller, but she believes his threshold is 20% and I should not worry. He will not cancel it, he will postpone it. He will order two more cycles if I don't hit 20%. So that was a relief. Because to have gone through this only to be disqualified would have made me mental.

But then giving me the stem cells back is inpatient for three to four weeks. I am relatively sure that I will not be allowing many visitors. And those will be infrequent. I have already informed several people that they are "not" allowed to come see me.

Denise asks if we have questions. I tell her I know my question is silly, but it's my question. I tell her that the thing that bothered me most was during my last hospitalization, I couldn't shower and wash my hair, will I be able to do that.

Poor Grace! Poor Denise! I look at their faces. I won't have any hair to wash.

Denise leaves and Grace tells me I am obsessed with my hair. She may have a point.

Thursday, November 25, 2010

It's a little thing, but it's my thing. So it was important. It's a good thing it's not complicated. I still managed to make it as difficult as possible.

Yesterday was very draining, so I knew driving myself to the supermarket was out of the question. And Grace had already done enough for me. So I sent a text to my good friend Kathy and asked if she was headed out to a supermarket. Everyone has some kind of last minute errand. Well, except for my father who had everything staged and at the ready yesterday. It's a military operation. And might I add....always a successful one.

So, of course, Kathy had to go out and she and her son were happy to take me along. They teased that I might not be up for the "Bucket", their nickname for the big, Market Basket in Chelsea. I was so tired and afraid of getting separated, they were right.

On a side note, that is one of the funniest of my quirks. The fear of getting separated in a store. I travel all over the country by myself. If I go with anyone, we all have cell phones. I had cash for a cab home. Nothing could possibly have gone wrong. But it's a fear my father and mother planted in me as a child. if I am in a store with someone, I must keep them in sight. So I kept watching her son who was always walking off. LOL!

Anyway, I had the shopping list for chutney - it's not long - but no mental skills. I needed 1/2 cup of sugar. I bought a 5 lb bag of sugar. Did I really think my parents had no sugar? Really? There were several things like that. My father mocked me this morning.

On the way back, Sean took us through King Arthur'sparking lot. Kathy made the traditional "Do you want a club sandwich?" joke.

Once I was back at my parents, a little energy burst came. Can't schedule them or predict them.....just gotta wait til they show up. I made chutney and brownies and listened to John Batcheloron the laptop.

So this morning, as I have for several years, I walked over to my Uncle Walter's house with four hollowed out oranges filled with bright red chutney. I only put his in the oranges....no one else appreciated the presentation!

I made it up the stairs to a comfy chair and the two Toms, Walter and I had a nice visit. Best part was it was a nice NORMAL visit. I don't mind talking about the multiple myeloma, or the chemo or the transplant.

But I don't mind not talking about it either.

It's important to hang onto what you can hang onto. That was something I got done like any other year and I am very pleased about it.

But I did mess up one thing. Grace always comes over after her dinner, around 5 or 6. I went upstairs for a few minutes at 4:30 and sat in my father's ultra comfortable recliner. I flipped through the channels for a moment. Oprah was talking about her interview with John F Kennedy Jr., from 1996.It was kind of bittersweet. He would have been 50 today. My Tommy walked through the room and said "You got that magazine." Meaning his political magazine "George". He was correct, I had loved that magazine.

I'm not usually and Oprah fan. I don't dislike her, I'm just not very interested most of the time. However, I'll always stick with a Kennedy story for at least a few minutes. Oprah talking about how after the interview she stayed with audience to talk about the question she didn't ask him - when was he getting married. Oprah is a woman intensely in the public eye and she was relating to JFK, Jr.'s his need to keep some part of his life private. The difficulties of having someone in your life who isn't in the public eye. She talked about what the person, who never sought the public eye, now has to take it on if they want to be with you.

Then she began to talk about his wedding which happened to take place shortly after the interview. It was a secret affair on some coastal island off Georgia. And as she spoke about what it took to keep it secret, you could see this struck a real nerve with her. She said it could only mean one thing. It meant he had people around him that he could trust.

What matters more than that?

Anyway, a few minutes later I was gone. I heard my sister's family arrive. I could hear them talking to my parents and my brother's family. It didn't matter, I could not surface.

I missed the whole visit. We usually sit back down at the dining room table and have dessert. Now everyone is gone and I can't find the blueberry pie.

Tuesday, November 23, 2010

Grace and I were born two years and one week apart. I am older. We shared a room for the first 18 years of my life with a short exception when we lived on Mystic and I had my own room.

Things were very hard. Grace is a neat-nick, I am a slob. I like to lay-about, Grace liked to do things.

I liked CBS Radio Mystery Theaterand Grace had nightmares. She preferred a complete overdose of Barry Manilow. don't get me wrong...I liked him, I just needed a break after 3 LPs.....don't know what an LP is? Get out of my blog you whipersnapper!!

My parents constantly begged, counseled and ordered us to get along....work it out.

We did try at times.

One particularly fond memory is a summer we were about 14 and 12. We were in Rocky Nook and we made a plan to wake up early and have breakfast together outside. We put the two gymp papasan chairs off of the porch and into the front yard with a table between them.

I know cereal was on the menu and I think there were poptarts. Juice would have rounded it out.

It was lovely It was just as my parents promised. When we tried........

And just as my parents promised, I would grow up and my sisters would be my best friends.

This is a photoshopped pic. By photoshopped I mean made into a motivational poster. The pic itself is taken directly from the HBO and is 100% accurate. Someone added a caption.

It reflects the sentiment of the person who photoshopped it. I don't know that SGT Jones agrees with or even knows about the photoshop. Mentioning POTUS may not suit his views at all. If he is the least offended and I will apologize and remove it immediately.

But for now, I like it.

If I had to guess based on what I have read, I would say that SGT Jones does not regret his service. He has worked with the Center for the Intrepid at Brooke Army Medical Center.

“...As for the future, I hope to always help other military men and women forever in any way that I can. I hope to graduate one day with degree in business that somehow incorporates helping others that need me in some way. I hope to be a positive influence for others and to set an example for those that have given up hope. I hope to alwaysbe the father and husband that my family needs and to always show them that I am forever grateful that they love me for who I am. "

Sunday, November 21, 2010

So, you know I am hooked on "The Walking Dead". A new episode starts in a few moments. I have my high potassium orange-pineapple-banana juice and a reheated slice of pizza.

Hot night, huh? LOL

Earlier I fell asleep on the couch and when I wake up my mother says... "Do you feel better?" I told her I did and she makes a "humph" kinda noise. I laugh and say that my eyes are almost all the way open. She suggested I go to bed because I still look really tired. I told her that I had to stay up for my Zombie show.....cause at least I look better than they do!!!

Plus she is worried I will oversleep tomorrow and miss my "stress test" at 0900.

Seriously? Who cares? I am already way stressed and I already have a bad attitude. Did I tell you about the stupid questions? They asked about how long certain activities take to go from discomfort to pain. I laughed and told them that I don't let them get to pain. Who would? Why would they? If something starts to bother me....I stop.

And tomorrow, if they push too far, I will push back, lol.

I haven't had any caffeine, it's a rule for the test.

So the plan is to get up and be there for a three hour stress test, followed at 1230 by my scheduled Velcade/dex infusion treatment. Once the stress test is over I can get a nice vanilla chai tea latte from Starbucks........yummmm....

But the real highlight will be dinner at Doyle's Cafein Jamaica Plain with some Nook friends. Once again I am so grateful for the people who say "Yeah, Diane/Maggie, we want to spend time with you."

I am so lucky.

Tomorrow night will be lots of fun as we sit and eat and laugh and share our memories of Rocky Nook and the great times we had.

I insisted that we keep to my plan for Jen's birthday and go to Foxwoods. Now, how strenuous can this be, for pity's sake! We drove down Wednesday, had facials, laid around the spa & pool. I must say, this is my last time at the Norwich spa, the MGM next door is just so much better. The service itself was great, but the whole set-up is all wrong. Then we changed for dinner and had melt-in-your-mouth filet at Cedars. I took all the right meds and slept for 8 hours. Thursday morning I felt fabulous! I wasn't even winded by the crazy Dunkin Donuts adventureand I was the energetic one that drove back to Boston.

I made it through infusion easily....after all, the laptop worked in there! Then it was off to the cardiologist, who saw me quickly despite the fact that I was the one who was late.

Jen and I went over to Grace's where we had dinner and a movie. I wanted to stay and go with them to Logan to pick up my nephew Dan who was returning from basic at Fort Leonard Wood, but I knew I wouldn't make it.

Does that sound strenuous? Does that sound like overbooking?

I have been paying ever since.

Friday and Saturday are a blur. Literally, I couldn't see most of the time. I am so full of fluid that my eyes are blurry and leaking. I showered Friday, but just put on a clean nightgown and sat on the couch. Yesterday I dressed after showering if you want to be nice and call my PJ bottoms and a T-shirt dressing. Then it was back to the couch for a day of western movies. I tweeted the USS Gravely commissioning, but really, that was no physical or brain power, was it?

Last night I was up a bunch of times and when I finally decided to give in and take another half dose of oxy....I couldn't break the stupid pill in half.

Finally, an hour ago, I sat up in bed and was ready to get up. But, for a minute, I just couldn't boost myself up to a standing position. I gave in and started to cry....and get this!!! Tears hurt! What. The. Fuck????? My eyes have been oozing, streaming, running for three days, but tears are different? They stung and I got a stabbing pain in my temples.

So I had to stop.

I got up and took the pills and brushed my hair and headed down to wash my face. Great! What if this is some kind of infection?

I sat down in one of the recliners in the TV room to wait for my father to come out of the bathroom. I was contemplating the irony of my life at this moment. How many times did I think I wish I had more time to just read....got plenty of time now, I just can't focus. How many times did I wish for more time to blog....got plenty of time now, for all the good it does me.

There are people who will come and take me anywhere I want to go or just keep me company, but I can barely get out of bed.

There are M&Ms and they taste funny.

My father has tons of john Wayne movies and fab TV and Blue Ray player...I just can't work myself up to it. He has a bazillion Direct TV channels and nothing moves me.

My calender is full of potential lectures and talks and presentations all around Boston. I could take a quick cab ride anywhere and see whatever I wanted.

I have gift certificates for meals and spa services nearby.

I feel like Burgess Meridith in "Time Enough At Last" which I always found to be an extremely chilling Twilight Zone episode.

So my Dad comes out, freshly showered and he is singing. He asks why I didn't knock, I tell him it wasn't that pressing. As I pass him, he sees my face. He bends his knees, rounds his shoulders and squints his eyes like some horrible troll.....or more precisely, a mirror of how I look "Well, don't pee your pants!"

Saturday, November 20, 2010

Robert Kennedy was born. I often write about his passing, it impacted me greatly because of it's timing in my life. But really it's a life to be celebrated.

One of my favorite quotes is -

"First is the danger of futility; the belief there is nothing one man or one woman can do against the enormous array of the world's ills — against misery and ignorance, injustice and violence. Yet many of the world's great movements, of thought and action, have flowed from the work of a single man."

I feel it is one of the most essential statements of optimism ever made. We get nowhere alone or together without each of us taking individual first steps. I know Kennedy inspired people of his and my generation to take those first steps. I hope it is true for future generations.

So Jen, Bette & I are in Foxwoods and....no word of a lie, as we used to say as kids.....the DD is a 10 minute trip from my room. Each way! Mind you, I know it would have been quicker in sneakers, but I never imagined it would be that far.

Jen & I came down yesterday, this was the last of her birthday presents. Bette got us the most fabulous suite. Partly because it's nice and I am sure, in part because I snore, lol.

Last time I was here in April there was some coffee/tea place right opposite the hotel check-in. It's gone and the only DD was all the way down at the Hard Rock. I figured it would be packed, but there was no line and three women waited on me, lol.

Ok, well I am off to the shower. It's not worth heading back to the spa. I have infusion today at 1 pm and a cardiology appointment at 3 pm (because of this nonsense).

Monday, November 15, 2010

So this was the shortest break between cycles and it definitely is bumming me out. Even though things have improved over the earlier part of last week, mornings are still slow. I will barely get rolling shortly only to find myself in the infusion room chair.

But, for all my whining here, I think it was a good plan. I might as well get a move on, huh? When this first started in August I was so shell-shocked at the sudden change of plans and so sure it wouldn't work that I was focused on living in the moment.

But now that we know that it's highly likely it will work and that it will likely buy me another two years.....I can refocus. Although, it definitely took me a while, lol!

So while I am planning some stuff for the next break, I will keep it to a minimum.

Oh...and there was lots of screaming at the Jets vs. Browns game, lol. My mother had to tell Grace to "Settle down!" because she couldn't hear the referee.

My replacement Flip video came and I was so happy, I was going to video the WWII exhibit....and I forgot. Oh well. There will be some video later in the week though. I will be down the Navy Yard and My Marine has asked me to get some footage of the USS Cassin Young restoration.

Bill Durette of the Charlestown Historical Society will be there with all his exhibits. Bill has worked tirelessly and his research into Charlestown veterans has been exhaustive.

He'll be set-up at 20 City Square in Charlestown. Which, if you know Charlestown, is one block east of Olive's restaurantand a few blocks southwest of the Charlestown Navy Yardand Old Ironsides. You could make an afternoon of it! Visit the ship (winter hours 10 am to 4 pm), take in the exhibit (1pm to 3 pm), and have lunch.

Or just ice cream, there is an Emack & Bolios right in City Square. Yeah, I know it's cloudy and in the 50s.....but New Englanders are hardy.

If you aren't familiar, it's just off the Freedom Trailonce you cross over the bridge from the North End.

Pinched this pic from the City Square Park blog. This was taken from 20 City Square, where the Charlestown Veterans History Project will be set up. If you come into Charlestown on the Freedom Trailfrom the North End, you would enter this pic at the top right corner. That brick building you will have on your right as you turn into City Square, has the Emack & Bolio's. The Freedom Trail will take you to the USS Constitution and loop you around to the Bunker Hill Monument, then back to City Square. So you can hit the Veteran's Exhibit on your way in or out.

If you have seen the exhibit before, because I have been several times, it's still worth popping in. Bill acquires new stuff all the time.

I often post pics of the view from Jen's house. Yesterday I had an errand that took me to the opposite side of the Bay. This is the view of Rocky Nook from Duxbury.

So, someone aggravated me. It wasn't really that aggravating, but I knew if I posted about it....someone, or in this case, more than one someone, would say "What jerk bothered you?"

And "poof!" I would be allllll better. It's almost mean to have posted about it, because I am so lucky and that person is such a loser.

But yesterday was aggravating. Fourth day of swelling and numbness and electrical shocks.....and an email from Kate, my NP. Kate addressed my concerns about last Thursday, but the bottom line was that infusion is what it is. I had also written to her about how jumbled and incoherent I feel and how I am slipping away from myself.

She answered that I wasn't imagining it. Kate suggested I stop "overbooking" myself until after the stem cell transplant. And it will get worse.

Living just a fraction of my normal life is now "overbooking".

So I was kinda feeling sorry for myself. But really, I have no business dwelling on it. Between my family and my friends and the people on this blog.....not to mention the fact that there will be life after the stem cell transplant......I am one of the most fortunate people I know.

If I sat down and listed the good parts and the bad parts....and you know I am too lazy to even attempt this.....I would run out of paper for the good parts.

You know in March I will celebrate a half a century. My sisters were already planning for this. I was shocked. You know how I found out? They beefed that my stem cell transplant was interfering with their planning! LOL! We are so mean! I love it! Grace said not to worry, I wouldn't actually miss the festivities.....they would put balloons on my wheelchair and wheel me in for an appearance.

Some friends from high school took me to the disco brunch at Gargoyles on Sunday. It's been years since I saw some of these people, but they put their weekend plans aside and came out to make sure I knew that I mattered to them. Brunch was good, their company was awesome and now I have a new term for the stem cell transplant. Alyce said she didn't want to think about all the time I would spend in the hospital, so she was just going to say that I was "going to the spa". Then the table had a discussion of what my hair will be like when it grows back in. Of course, that was after we had a good laugh about how it's blue and purple now. I love the color, it rocks!

The other day, my son Tom helped me pick out a pair of PJ's for my "trip to the spa". They are purple and go with my hair.

So it's Jen's birthday and this blue and purple haired sister is taking her out for a "spa pedicure".

Even though I fell asleep after the last post and dreamt that I missed breakfast....I made it. On time too! Tom came through the door of the Blue Blinds Bakeryand looked like he had acute indigestion, lol. He started patting my back. We aren't touchy-feely, so I know that he was beside himself.

As soon as I realized, I told him it was fine, relax. We ordered our breakfast - I got pancakes that were dry and he had underdone french toast. But we split an apple danish that was to die for! So, I recommend that you just utilize the bakery part and skip eating the meal. Although the eggs might be good, who knows.

Then he came with me to Walmart because I was still shaky from last night. You know, Walmart has Christmas candy out.....Hersheyettes.

I know I should focus on the fact that I am lucky to have people taking care of me so that I can watch six episodes of "Boardwalk Empire"......

But you know I have trouble with that whole glass half full.

I didn't go to work.

I barely cleaned that half bath and that was a matter of principle. Jen came down and caught me - "Good God! What are you doing? Get out of there!"

I finally roused myself enough and the tingling and numbness receded enough that I was able to be driven down to East Bay where my fav bartender, Dick fed me steak tips and malarkey.

I am supposed to meet my son Tom & his girlfriend for breakfast in less than four hours.

I am miserable.

Even though Mary Ripley called and was highly entertaining.

And My Marine was attentive allllll day....thanks baby!

And Jen & Bette & Dick were fabulous.

Jen said something last night and once again I am struck by the lengths people are willing to go to for me so I can feel better. Or good. Or not so shitty.

But right now all I can think about is how my legs are killing me and they are tingling and numb and I am scared. I can't read or really blog because my eyes keep losing focus - which is a plus when you watch "Boardwalk Empire" because the lead character is so homely, lol. But still, it scares me when my vision blurs.

Plus, with this storm, I keep losing the Internet connection and it's driving me mad!

And even if it improves tomorrow......in five days I am back in infusion.

I am still dizzy and super shaky. That will likely continue through Monday. My last Revlimid is Sunday night. Monday will be slow, but taper off.

In the meantime, I am going to make these cupcakes. Get a few more purple and blue highlights put in my hair. Go over to Gracie-baby's house and have Debbie make me a nice pasta dinner.

If I am really ambitious there is a movie I want to see at the Museum of Fine Arts tonight.

Meanwhile I am waiting for T to come and do something about the inspection sticker on the van. He promised last Saturday.....he promised this Saturday. They had the van the whole time I was in Vegas, the Grand Canyon and Annapolis. So I am not holding my breath.

Friday, November 05, 2010

It’s usually cringe-worthy when non-native actors attempt to mimic Bostonians: Julianne Moore on “30 Rock” and just about any movie about the Kennedys come to mind.

But pity the locals who routinely get typecast as a Southie waitress or Charlestown thug because their thick accents make it “wicked hahd” to land other roles.

Boston Casting, which works in films, commercials and reality TV, is offering a solution: a four-week “Boston accent reduction” class. Owner Angela Peri had been mulling the class for years, because her own accent prevented her from getting work as an actress.

“If you’re an actor and really want to pursue a career and play with the big boys, you can’t have an accent,” Peri said. “Over and over again I see somebody with great talent, and they can’t get past the accent.”

Peri estimates that just one in 10 jobs that she casts calls for a Boston accent.

“We’re doing this TV show with Dana Delany called ‘Body of Proof,’ but it’s set in Philadelphia,” she said. “As soon as they hear the Boston accent - no matter how good the actor is - it’s ‘Out!’ I’ll even practice with them before they go on camera: It’s ‘mother,’ not ‘mutha.’ It’s ‘brother,’ not ‘brutha.’ ”

Speech pathologist Marjorie Feinstein-Whittaker, a corporate communication trainer who’s been doing “accent modification” work for the last decade, is one of the course teachers.

Instruction will focus on correcting the hallmarks of a Boston accent, from omitting “r” at the ends of words - “Pahk the cah in Hahvahd Yahd” - to correctly pronouncing “or” words such as corn and color instead of “cawn” and “coluh.”

The key is motivation and practice, according to Feinstein-Whittaker. Participants will get word lists targeting problem sounds and stories loaded with r-colored vowels to practice at home.

“Initially they might feel like they sound a little bit worse or stilted,” Feinstein-Whittaker said. “But I think it’s easier for an actor, as opposed to someone like a lawyer, because they do a lot of role-playing and reading scripts. It’s more in their comfort zone.”

Once mastered, a neutral accent can easily be turned on and off, she said.

“I had one client saying he was here for ‘accent elimination,’ ” she said. “I said that sounds like an extermination service. I’m not taking away who you are. I’m just adding a neutral American accent so you can use that when the situation dictates.”~~~~~~~~~~~~~~~`Ridiculous! I would never change the way I speak...for anything.

When people tell me that a Boston accent sounds uneducated or dumb, I just cock my eyebrow and stare them down until they concede that they certainly don't mean me.

When someone remarks on my speech pattern I explain "English came to America through New England, specifically Plymouth....what people did with it south and west of here is not my concern. I speak perfectly."

I have found no one stupid enough to argue further.

Someone looking to mask such an essential part of who they are and how they were raised has low self esteem and I feel sorry for them.

It isn't an actual quote from Adams. But I am quite sure it encapsulates his feelings. "There are only two creatures of any value on this earth. Those with a commitment and those who acquire the commitment of others"

I have never served in the military. My Dad's service was completed before I was born. My ex-husbands as well. But I have friends and they are committed. I am honored to help in whatever way I can.

Right now we are in the midst of the annual Project Valour-IT fundraiser. I have done a very poor job. Yesterday was the last infusion and Sunday evening will be the last Revlimid. So I should begin surfacing over the weekend. The #TeamNavy goal is $15,000 and they are one third of the way there without my help. Let's see if we can't speed them along.

Please follow this link- read about this very worthy project - and make a donation, cover it on your blog, email your friends. Anything would be appreciated. Please join #Teamnavy and acquire the commitment of others..

Thursday, November 04, 2010

Back on Revlimid, which means that I am functioning like a cell phone that needs very badly to be charged.

The plan was to get up and get things done. Get to infusion, get out, meet up with Tommy for his birthday and be in the Boston Public Library for the Lowell Lecture series event tonight featuring Dennis Lehane.

Not exactly a jam packed day.

First, I was in total slo-mo. But that's ok, it will pick up. Plus there is frequently a boost when they give me the steroid. That will likely propel me through the second part of the day.

I manage to shower and dress and be ready for my Dad to drop me off a little early for my 1 pm appointment.

I am checked in at 1:02 pm. I am in the chair.....and....boom....out like a light. People come and go, I struggle to stay awake. I fail.

They finally put in the IV and draw my blood at 2 pm. Damnit! Sixty minutes wasted! I tell them I am going to get a cup of tea. I think this will help me. I have to wait 60 minutes for the results, so I want to be alert at 3 pm to get going and make my lecture. Clearly, I won't make lunch with Tom. I go across to Starbucks, get tea and a muffin. When I return I make a point of standing at the window and flipping through some magazines. I want to be on task at 3 pm. Dr. Miller and Kate came in to talk to me. That was a little aggravating too. There were questions about the chest pains Monday night and previous episodes of shortness of breath. But I am getting things jumbled up. Finally he asks if there were ever anything before I met him and I burst out laughing. NO! Life was good back then. There were no problems.

I hear him ask Elizabeth if she needs anything and she tells him to sign my orders. There can be no drugs till he signs the orders. So I relax. I am good to go...right?

No, I fall asleep and the first IV bag of steroids comes in 25 minutes later! Criminey! I try walking around again. But the chair draws me back in and I fall asleep. Now it's 4:25 and they are just giving me the Velcade. They still haven't even started the pamidronate and that takes two hours. I figure they close at 5 pm and they will just cancel it. But NO!!! They stay until 7 pm. they start the pamidronate at 4:45 pm and finish at 6:45 pm.

The lecture was at 6 pm.

Fine, I am going to go up the street to PF Chang's and have wonton. I just need them to unhook me. But it's a nurse who doesn't know me and even that blows.

"Oh! You're a bleeder!"

It's on the floor, it's on my hands, it's on my effing sweatshirt. I told her to turn the light on and she wouldn't.

I leave, the bathroom is locked for the night....always good news for someone on Lasix. But I make it to PF Chang's. Use the facilities. Wash up my blood stained hands (I washed at the sink in infusion, but I was so dopey I missed some).

I order wontons and a Coke and finally relax. They were fabulous. I got some noodles to go....no mushrooms please. But you know that was too much to ask for. I stood over the bucket in my parent's kitchen and picked out the mushrooms.

But after that I put Nutella on some crackers and now everything is good.

I am going to watch Fringe and stop thinking about infusion. I go back in 10 days. I have pushed for longer breaks between previous cycles, but there are no plans. Might as well get it over with.

Wednesday, November 03, 2010

First - I am mad at Jeff Perry. Way back when the 10th was first being discussed, I wanted Bob Hedlund to run. I like Bob. I know Bob. But Jeff got in first and Bob backed him, so I did too.

Fine.

But the second this scandal surfaced, Jeff should have stepped aside and Bob should have gotten in and Keating would have lost.

Next, I am mad at Charlie Baker. I do not believe he tried as hard as he could have. He does not have the stomach for politics and he did not hit Deval Patrick everywhere he could have. I think Charlie found some of this distasteful. I think it is extremely unfortunate because I loathe Gov Patrick. But also because I sincerely believe Charlie Baker would have done a good job.

Next, I am mad at a man I much admire CDR Lippold. Way back when he considered running against Harry Reid. If he had, that race would have turned out differently. Sharron Angle was a nut and look how close she came to unseating Reid. Imagine if someone as smart and honorable and admirable as Lippold had run.

Lastly, I am mad at myself for letting my hopes get out of hand. What was I thinking? I fell for the pie in the sky.

So Monday night after our potassium episode I go up to the 3rd floor to bed.

12 steps.....landing....12 steps....dumped my stuff on one side of the bed and flopped on the other.

For some reason stairs are hard on steroid patients. Kate, my NP has confirmed this is normal, so I stopped worrying about it. I can walk and walk, but just two flights of stairs is a deal breaker.

I reached over after a few minutes to grab the O2 and see if I couldn't get a few good deep breaths. But...the O2 tank was empty.... Well that just means I have to wait it out.

Then I sat up to take some pills and a wave of nausea threatened to overwhelm me. I put my head back on the pillow and waited for 40 minutes. I was cataloguing my symptoms. Shortness of breath. Chest pain. Pain in left arm. Nausea. Headache. I knew these were things I was supposed to call them about.

But I kept waiting.

Part of it was that I didn't want to bother my parents. They were asleep. So I called Grace from my cell phone. My mother hasn't stopped making fun of me for this. "Why did you call Grace? We were right here." So Grace very calmly told me to hang up because she was going to call the house phone.

A few seconds later my father was in my room. We talked and he called the on-call doctor. It was Dr. Yang. But not the kick-ass Dr. Christina Yang from "Grey's Anatomy" because this Dr. Yang had to look up Velcade and didn't listen carefully to what my father was saying. I almost want to warn people when they are going to talk to my Dad. He is very smart, but very demanding. If you don't listen the first time and make him repeat himself, it's not going to go well for you. Oh well. Dr. Yang wanted them to bring me to the ER. She actually wanted him to call an ambulance even though she knew that would mean I would be brought to Mass General as it was closer than Tufts/NEMC. I didjn't know that part. I thought she wanted me over at Tufts. But all I could think about is all those icky dirty people I see hanging outside that ER when I pass on my way to infusion. Remember the scene in "The Exorcist" when Father Karras is in the subway and the bum says "Father, can you help an old altar boy? I'm Catholic" Ok, that guy and all his rummy friends are hanging in that ER. Plus all these stupid vacant looking people who step just outside the door to blaze up their cancer sticks and talk loudly on their cell phones about abusive family members and swear colorfully about the police or social services. Not to mention the neighborhood people (it's Chinatown) who hack and spit everywhere.

You can call me prejudiced and snotty. I don't care. I felt like shit and I couldn't face that at that hour of the night. If it was daytime, I would have let them drive me over and I would have planted myself in Dr. Miller's office.

But it wasn't daytime. So I told them I wanted to wait it out.

My mother came wandering in my bedroom and put my stuff on the floor to make a spot for herself on the bed. "You'll do anything for attention." We laughed.

After it was settled, my parents covered me up and shut out the light. My father called Grace to tell her what we decided and I could hear him tell her that it was fine he would just stay up all night and watch me. I turned my head into the pillow and cried. I felt like such a jerk stressing them out like this.

I have to work on not panicking. As it turns out, I slept for a few hours and the nausea passed. then I could down a few Tylenol and the headache went away. By morning I could breath freely and the chest pain receded.

Grace showed up Tuesday morning and carted my ass all around. I voted (don't get me started on that!) and we picked up my O2 tank and my Revlimid - YAY! (did that seem sincere....it wasn't) and we grabbed Jen and went to Lily's. Grace charged my cell phone. We brought my mother a Jenny's pizza and had a good visit.

Today after breakfast I picked up a book from the stack Grace brought over - "The Girl who Stopped Swimming".I sat down in the living room, my mother reading in the other love seat. I finished it in a few hours. It was a total snack. No redeeming value, just fun.

Monday, November 01, 2010

Ok, so today was supposed to be freakin' awesome. No Revlimid. Good night's sleep.

No.

First, I could barely get up, but I thought - "This will pass. Maybe I am just stiff from the cold of Jen's house." You know Jen's house was close to the outside temp of 32 degrees, lol!

I went into the bathroom and my face was all puffy, my eyes were slits. My vision was blurry. I looked down at my feet, they weren't swollen. I haven't missed any Lasix. WTF? So I washed my face....brushed my teeth.....washed my face again because I forgot I had done it. LOL! Maybe I was trying to shrink my face with hot water!

So I had something to eat, took my Lasix and showered. I made it into infusion probably five minutes late. And apparently they were a little askew today as well. They seemed not prepared to see me. Kathleen who has done my insertion four or five times introduced herself like we were strangers and like she wasn't wearing a big freakin' name tag. Oh well.

I told her that after the IV was in I was going to take off. I know if I stayed in that chair I would have passed out. I kept thinking I just needed to pull myself together.

So I headed up into Chinatown. I was walking around for about 45 minutes. My whole body ached like I was getting the flu. I was a little shaky as to where I was. I am a lifelong Bostonian and I couldn't find Tyler Street. Fortunately, I got back to the infusion room.

I haven't been eating high potassium foods since I started this cycle. I am lucky it wasn't worse.

So they gave me two giant, salty, horse pills and the infusion and I headed out.

I got some orange-pineapple-banana juice, some bananas and some bruschetta - tomatoes are good for this.

I walked in the door and told my Dad that I had a job for him. First he teased that he was off-duty, but then he grilled me on the problem.

Safe to say I never have to worry about this again. Every day for the rest of my life there will be a "Frank-check" on what I ate that contained potassium.

P.S. As I type this, my mother has joined me in the kitchen. She is eating a pretzel with Nutella and complaining that I bought the wrong kind of pretzel (I did). We are discussing the banana thing. She tells me that Dad buys bananas for her and she doesn't eat them. I tell her they are good for you. She responds with a smile "I don't need them. I don't have your problem!" her tone is mocking, like my problem is unclean, lol! She slays me!

Massachusetts Bloggers for Monti Scholars

About Me

I am 54, happily divorced, mother of two, grandmother of the most spectacular baby boy. I am a registered Republican with fiscally conservative views; libertarian social views & ardently supportive of a strong US Military
I was born and raised in Boston and can not conceive of living anywhere else. I think Brian Lamb of CSpan is the sexiest man on TV. If you want my attention, you have to be aggressive and smart and you have to feed my head.
If you want an explanation for the pic, go to this post.